Friday, January 30, 2009

Better But Not Great

It has been a long week.  Molly's pain is much better, which is wonderful, but there is still a lot of fear and some moments of pain.  We went on Tuesday and picked up a brace that was made for her.  It has been great for the past couple of days.  It is VERY substantial.  It is similar to the braces you see when people have had knee surgeries/injuries.  It has joints at the him, knee and ankle and then velcro straps keeping it in place.  There is a thick and hard plastic waist that goes around her middle and all along her back.  It was great for transferring in and out of the car, wheelchair, etc. but doesn't seem to be as good at night.  

She has been very feisty and demanding over the past several days.  I don't blame her for being so frustrated at her lack of mobility - she can't even go from laying down to sitting up independently.  It has been exhausting and challenging to decide when to give in to her bad, demanding behavior and when to talk about better ways to ask what she needs.  There has been a lot of crying this week - some from pain, so from fear, and some from frustration.  I am really looking forward to having this fracture healed and in the past.  

She was up during the night and very upset.  We finally got her back to sleep, but this morning I decided to take her brace off for the first time to see if it was the brace that was causing her problems or if it was her leg.  Well, the transition from the brace to splint was full of fear and crying, but once the splint from the weekend was back on she was fine.  She said she doesn't want the splint because it can get caught.  She said it got caught the one night (meaning Saturday night) - ugh.

So far the splint is working, we'll see how the day progresses.

Molly started "school" this week.  A teacher is coming twice a week to play with Molly and so far it has been wonderful.  I will keep you posted.  

Jim is working a ton and so we have not had the chance to take and/or post pictures - we'll work on it.

Sunday, January 25, 2009

Molly Update

Sad Sad Sad

Sorry to complain, but we are having a very tough time here in NC.  Poor Molly.  She was starting to feel a little bit better, so we had started taking her upstairs to sleep.  That worked out fine on Friday night, but Saturday night something didn't work out well in the transfer when I went to put her down her leg twisted and it was like it was broken all over again.  The Mclains (Amanda that is 12 with OI) came over to give us some advice about how to make a better splint and that seems to have improved things at least a little bit.

She is having so much fear that it is sometimes hard to know when she is having pain and when she is just afraid it will hurt.  She is still her happy and silly self most of the time, but when it comes time to do anything like go from sitting to laying down or change a diaper etc. there is a lot of drama and crying.

We spoke with Dr. Esposito last night and he is confident that this will heal nicely on its own and that she will be feeling a lot better in 7-10 days.  It was nice to hear that she will be feeling better soon.  We are going to look into having her fitted for an orthotic brace (the black ones you see people with after knee surgery) that would immobilize her knee and hip without having to use a SPICA, which is a cast that goes from toe to armpit on the hurt leg and and down half-way on the good leg.  I am really hoping that we can avoid a SPICA.  She would not be able to sit up and would be covered with fiberglass over most of her body.  We have been fortunate to avoid these so far because of her rods and I am hoping for that trend to continue.

Jim's Mom is flying in today and I am hopeful that having an extra set of hands will lift our spirits. 

Thursday, January 22, 2009

Bad Right Femur Fracture

Ugh.  I had been looking forward to posting about our big snow storm and now have to write about Molly's long night with a broken leg.  I was at soccer last night and Jim was getting Molly ready for bed and she fell while using her walker.  She has been complaining about knee pain off and on for the past several days, which was probably an indicator that she had a weak spot forming.  

This was our worst fracture to date.  Thank goodness she has a rod in the leg.  I got home within 20 minutes of the fracture and we made a splint, which is a very emotionally draining process.  It is hard to take off the parent hat and put on the nurse/doctor one for your own child.  As we made the splint (which helps to immobilize the bones) you end up moving the very limb she doesn't want moved and the screaming can be intense and horrible.  We had the splint on within 1-2 minutes and that did seem to provide some needed support.  The leg swelled fairly quickly and she just kept crying and saying her leg hurt, even with the splint on.  In the past once we got the splint on and kept her still that coupled with some good pain medication has been effective at allowing her to rest.  She did not sleep at all last night.  As soon as she would start to fall asleep she would jerk her body (like that feeling you sometimes get that you are falling as you start to nod off) and this would really hurt her leg and it only took a few times of this before she must have decided she would just rather not sleep.  She watched movie after movie all night long.  

Poor Jim is coming down with a nasty chest cold at the same time and so we all had a rough night.  This is the first time I have found that the medicine and splinting didn't seem to be enough.  It is hard to find ways to soothe her when she is in such significant pain.  All I want to do is pick her up and hug her, but of course the last thing she wants is to be moved at all.  I am feeling so sad for her.  This has been a very difficult year full of pain.  I am not loosing sight of the fact that she is doing far better than we ever would have imagined, but it is still so hard to see your little girl in such significant pain and you don't have any tricks left to help comfort her.  
We went to the orthopedists office today for x-rays and she did far better with the transporting to and from the car than I would have predicted.  She fell asleep in the car on the way home (after a few more of the painful jerks as she fell asleep) and is still resting there now - keep your fingers crossed that she gets some good sleep.

Dr. Esposito just happened to call last night to discuss her humerus (upper arm) x-rays from last week and gave me some good advice and reassurance that we were doing the right things.  Boy do we LOVE Dr. Esposito.  He predicted right about where the fracture ended up being.  He was hopeful that she would be comfortable within the next few days thanks to the rod, but we will have to wait and see.  Without seeing the films his thoughts were that we would wait and see if the leg healed properly on its own, which would be nice since she just has surgery last month.  We know that we only have 3-12 months left before one of these fractures will send us to surgery, but the longer we can wait the bigger the rods will be and then the longer they will last for her.

Tuesday, January 13, 2009

Happy Birthday Molly!

It is hard to believe our little princess is 3!  She had a wonderful birthday party on Sunday with her two friends: Livi (almost 4), and Audrey (3).  We decorated tin purses/lunch boxes with gems and faux flowers, had sandwiches and chocolate cake with chocolate frosting (which Molly requested and baked herself).  My parents were both in town for the big event, which made it even more special.

Today is her official birthday and she has been giddy and happy all day.  We bought a fabric "swing" from Ikea and it is now hanging in our family/tv room and was a very big hit.  She spins around and around and got so dizzy this morning she just sprawled out on the floor for a few minutes after getting out.  

We took down the crib on Sunday and she is adjusting to her new "big girl bed".  We bought a memory foam mattress and placed it on the floor with a fabric tent that goes over the whole thing.  She has been good at staying in and not exploring the room (we took almost everything out of the room for safety), but wakes up a  few times in the night and calls for us.  She called for me this morning around 5 and said she had fallen out.  I'm not sure if she just worried about falling out or actually fell out, but she was unharmed and back in bed when I got in there.  We have foam tiles and pillows all along the edge of the bed to cushion her if she did fall out, but it is still something we are all a bit worried about.  We were starting to worry that as active as she is that she might get her foot caught in between the rails of her crib and if she were to fall it would be a very nasty fracture.  She was also now tall enough that the crib rail hit her right at the nipple line, so we decided the risks of keeping her in the crib were beginning to outweigh the risks of being in a bed.  Two nights into it things are going well other than the fact that we are having to go in a couple of times during the night.

We went to Dr. Caudle's (the orthopedists) office today and took X-Rays of her right arm and things look very good.  We will be sending the films along to Dr. Esposito, and we are hopeful she will get the green light to start using her walker!!  HOORAY!  

Tuesday, January 06, 2009

Things are well at our house.  We had a nice New Year's at home with Molly.  We had a picnic on an aerobed and watched Horton Hears a Who.  It was a nice way to spend the holiday as a family.

Molly seems to be feeling better by the day and has wanted to walk more and more and often only needs to hold one of our hands.  We are tempted to bring out her walker, but will try to hold out for the verdict on her x-rays next week.

The Extreme Makeover Home Edition on ABC this Sunday (8 pm eastern) is for a little boy with severe OI.  We are really excited to see what they have done for him to get ideas and also to help people understand Molly's condition.  Hope some of you can take a look.